Tourette Syndrome In Children

GENERAL INFORMATION:

What is it? Tourette (ter-et) Syndrome ("TS") is also called Tourette's disorder. It is a type of tic disorder. TS usually begins before age 18 and is more common in males. Your child may have jerking movements called "motor tics" that cannot be controlled. He may also make sounds called vocal tics that he also cannot control. Tics may cause your child problems in his daily activities. Temper tantrums are a common sign that your child may have TS. Your child may be able to control having the tics. He sometimes may not feel a need to have a tic. The tics may come back strongly when your child wants them to.

• Many children with TS have learning problems and may also have attention deficit disorder ("ADD"). ADD makes it hard for your child to pay attention and he may be overly active. Sleep disorders are also common in children with TS. TS may cause your child to feel left out from other children, making him sad. He may be ashamed or anxious. He may feel guilty, helpless or angry. TS may cause a lot of stress for your child and for your family.
  
  
• There is no cure for TS but medicine and other treatment can help your child. Most cases of TS are mild. Most people with TS get better as they get older. Without care, TS can lead to more serious problems like depression.

Causes: It is not known what causes TS. Studies have shown that TS may be genetic (juh-neh-tik). This means your child may be more likely to have Tourette Syndrome if someone in your family has TS.

Signs and Symptoms: The symptoms of TS may be mild, or may be very bad. How often your child has tics may change from moment to moment and from day to day. Your child may have tics 20 to 30 times a minute. Or, your child may have tics only a few times every hour. Your child may go for weeks or months without having a tic. Being tired, afraid, anxious, or excited may cause your child's tics to be worse. Your child may have any of the following signs or symptoms.

• Motor Tics:
  
  
  • Biting or pinching.
    
    
  • Doing same things over and over, such as writing the same word many times.
    
    
  • Eye blinking or rolling eyes upward or side-to-side.
    
    
  • Finger movements or hand clapping.
    
    
  • Frowning.
    
    
  • Hopping or kicking.
    
    
  • Head banging or shoulder shrugging.
    
    
  • Hitting or touching things or people.
    
    
  • Jaw snapping or tooth clicking.
    
    
  • Jerking of any part of the body.
    
    
  • Kissing or sticking out tongue.
    
    
  • Nose twitching or smelling things.
    
    
  • Pulling out his hair.
    
    
  • Tearing paper or books.
    
    
  • Throwing things.
  
  
• Vocal Tics:
  
  
  • Barking.
    
    
  • Coughing.
    
    
  • Grunting.
    
    
  • Hissing or whistling.
    
    
  • Saying same words over and over, such as "oh boy" or "shut up."
    
    
  • Spitting.
    
    
  • Sucking sounds or tongue clicking.
    
    
  • Yelling out "dirty" words.

Care: At first, your child may be seen in a clinic or your caregiver's office. Your child may need to see caregivers once a week until he starts to feel better. Your child may need blood tests and other special tests. Your child may need to take medicine to control his symptoms. He may also attend therapy sessions to help his condition.

• Medicines: The following are types of medicines your child may have to take.
  
  
  • Anti-Anxiety Medicine: This medicine may be given to help your child feel less nervous. It may be given by IV, as a shot, or by mouth.
    
    
  • Anti-Depressants: This medicine is given to lessen or to prevent the symptoms of depression. It can also be used to treat other behavior problems. It is given by mouth.
    
    
  • Anti-Convulsant (kun-vull-sunt): This medicine is usually given to control seizures. But, it may also be used to lessen violent behavior, aggression, or irritability. This medicine may also help control your child's mood swings. It is given by IV, as a shot, or by mouth.
    
    
  • Anti-Psychotics (si-kaw-tiks): This medicine is usually given to lessen the symptoms of psychosis or very bad agitation. Small doses are often helpful in treating some of the symptoms of TS. Anti-psychotics are given as a shot, by mouth, or in the anus (rear-end).
    
    
  • Anti-Parkinson's: This medicine is used to control muscle stiffness, twitches and restlessness caused by anti-psychotic medicine. It is given by mouth or may be given as a shot.
    
    
  • Blood Pressure Medicine: This medicine is usually used to control high blood pressure. It may also be used to help decrease motor and vocal tics. Blood pressure medicine may help your child feel calmer, more focused, and less irritable. It may be given by mouth or as a sticky patch put on your child's skin.
    
    
  • Psychostimulant (si-ko-stim-u-lunt): This medicine is given to help your child pay attention and concentrate better. It can also help improve your child's energy if he has attention deficit disorder. Stimulants are used carefully in TS because stimulants may make some symptoms of TS worse. It is given by mouth.
    
    
  • Sedatives (seh-duh-tivs)-Hypnotics (hip-nah-tiks): This medicine may be given to help your child feel calmer. It is often used to help your child sleep better at night. It is may be given by mouth. It may also be given by IV, as a shot, or in the anus (rear end).
  
  
• Caregivers:
  
  
  • Psychiatrist (si-ki-uh-trist): This is a medical doctor who works in the area of mental health. The psychiatrist is in charge of ordering your child's medicine. You may work closely with this doctor and other caregivers.
    
    
  • Therapist: This is a caregiver that works closely with your child during treatment. This person may be a doctor, psychologist (si-kall-o-jist), nurse, mental health counselor, or social worker.
  
  
• Care Settings:
  
  
  • Intensive Outpatient Program: This is when your child comes to the hospital or clinic for 1 to 3 hours of treatment. This program is usually 2 to 5 times a week for a short period of time.
    
    
  • Outpatient Program: This is when your child meets with his therapist once a week or less. Appointments are one hour long or shorter. He could meet one-to-one with his therapist. Or, he might meet with his therapist in a group. He may have few or many scheduled appointments over time.
  
  
• Types of Therapeutic Sessions:Couples Therapy
  
  
  • is when you and your significant other meet together with a caregiver to talk about how to cope with your child's illness. Your significant other may be your spouse (husband or wife), or a boyfriend or girlfriend.
    
    
  • Family Meetings are when caregivers meet with you, your child, and your family. Caregivers talk with everyone about how things are going at home. And, family members may have concerns they would like to talk about. Caregivers can help your family understand your child's illness and learn better ways to react to a child with TS.
    
    
  • Group Therapy is a series of meetings that your child goes to with other children who have TS. The children and staff talk together about ways to cope with TS during these meetings.
    
    
  • Individual Therapy is a time for your child to meet alone with his therapist. They may talk about how to cope with his TS and how to feel better about himself.
  
  
• Types of Therapy Approaches:Behavioral Modification (mah-dih-fih-k-shun) The following are types of therapy approaches that may be used to help your child.
  
  
  • may help your child to modify some of the more severe tics into more mild ones.
    
    
  • Biofeedback Therapy is a special way to control your child's feelings (like fear) and body responses (like fast heartbeat). The first step in this training is to use electrodes (wires) to monitor your child's body responses. These electrodes are placed on different parts of your child's body, such as his chest. The electrodes are attached to a TV-type monitor that gives a paper tracing of your child's heart beating. Your child will learn how to control body changes, such as slowing his heart rate, when he becomes fearful. Teaching your child to manage fear and stress will help to decrease tics.
    
    
  • Cognitive Therapy helps to make your child aware of how he sees things. He may have trouble seeing the good in things around him. Then he is more likely to feel depressed, sad or angry. Cognitive therapy teaches your child to recognize how he sees things and helps him see them in a more positive way.
    
    
  • Hypnosis teaches your child to change his level of awareness. This means that caregivers teach your child to focus his attention so he can move away from stressful feelings and thoughts. Your child makes himself open to suggestions, like feeling happy and relaxed. Hypnosis gives your child better control of his body.
    
    
  • Insight Oriented Therapy helps your child think about things that have happened in the past. It helps him understand his feelings and behavior now as it relates to past events.
    
    
  • Meditation Therapy is a rest and relaxation therapy that teaches your child how to focus inwardly. The goal of meditation is to help your child feel more calm and peaceful.
    
    
  • Relaxation is step by step therapy that teaches your child how to calm his body and mind. The goal is to feel less physical (body) stress and have less emotional (mind) stress. Good smells can help change your child's mood and help him relax. These good smells may also help your child's brain make special chemicals called endorphins (n-door-fins). Endorphins are a natural body chemical that can lessen feelings, like fear. Have your child try listening to music or taking a warm bath with aromatherapy (uh-ro-muh-thair-uh-p) oils. Candles, massage oils, and scented bubble baths are all ways that smells can be used.

Patient Rights:

• Release of Information Form: This is a legal paper letting caregivers share information with those listed on this form. A parent or legal guardian must sign this form. No information can be released to persons outside the hospital unless this form is signed.
  
  
• Right to Privacy: Information that you and your child share with caregivers is kept private among caregivers. They will not share information with others without your permission.

Coping: Accepting that your child has TS is hard. Your child's illness may make you feel angry, sad, or frightened. These feelings are normal. Talk to your child's caregiver, family, or friends about your feelings. Caregivers will talk with you about how things are at home. Your caregiver can help your family better understand how to react to a child with TS.

• Your family may also want to join a support group. This is a group of people who know people with TS. Ask your caregiver for the names and numbers of support groups in your town.
  
  
• Ask your health care provider if they know about books that you can read. Reading about your child's illness might help you better understand it. You can also call or write one of the following national organizations for more information.

• American Academy of Child and Adolescent Psychiatry
  3615 Wisconsin Avenue NW
  Washington, DC 20016
  Phone: 1-202-966-7300
  Web Address: http://www.aacap.org
  

• American Academy of Pediatrics
  141 Northwest Point Boulevard
  Elk Grove Village, IL 60007-1098
  Phone: 1-847-434-4000
  Web Address: http://www.aap.org
  

• National Institute of Mental Health (NIMH), Public Information & Communication Branch
  6001 Executive Boulevard, Room 8184, MSC 9663
  Bethesda, MD 20892-9663
  Phone: 1-301-443-4513
  Phone: 1-866-615-6464
  Web Address: http://www.nimh.nih.gov/
  

• Tourette Syndrome Association
  42-40 Bell Boulevard
  Bayside, NY 11361-2820
  Phone: 1-718-224-2999
  Web Address: http://www.tsa-usa.org
  

CARE AGREEMENT:

You have the right to help plan your child's care. To help with this plan, you must learn about your child's health condition and how it may be treated. You can then discuss treatment options with your child's caregivers. Work with them to decide what care may be used to treat your child.

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